One year ago today I received the gift of life in the form of a unilateral right lung transplant at UW Hospital through the Madison VA. As readers of my blog know, it has been an up and down year, with the low point on May 26, when I had to go on a breathing ventilator, but fought through it. Thankfully, I haven't been back in the hospital since July 7 (I was in four times between March and July), and have been back off oxygen since August. My FEV1 average for the last week of the three highest in the morning and three highest at night has been running from 1.71 to just over 1.79 (highest since March 30). It was 0.91 on July 7. FEV1 is Forced Expiratory Volume, the litters of air you can blow in 1 second. Highest was 2.24 in January.
As you know from previous updates, I still have a lot of side effects from the steroids and other drugs; I have a tremble, cataracts (operation on the left eye coming up), diabetes, and a shot short-term memory. Also a bit of ADD, but maybe that's natural. I still have labored breathing with exercise, from collapse in the bronchial tubes, but I spend nine hours a night on the BiPAP and 2-4 hours during the day, which is helping. The steroids also make keeping the weight off hard and I have crept up about 25 pounds since I was in the hospital right after the transplant. But I'm fighting it.
Every day, I record my six highest FEV1 numbers, weight, temp (twice), blood pressure (twice) and take my blood sugar three times a week. I also take between 40 and 50 pills a day (some are M, W, & F, others PRN), use a nebulizer 5 or 6 times, use a nose spray and a Neti pot both twice a day. I also go to rehab three times a week--I'm a fixture there, having annoyed them for over a year now, but I have steadily added weight or speed on the treadmill since July. I think my DIs would approve, though they probably wouldn't tell me so. I spend about 35 hours a week on health maintenance. I was hoping to get back to PT work by now, but it's not in the cards yet.
I still have to wear a mask in the hospital or closed environments like a plane, and always have one with me in has I'm in close contact with a lot of folks, or with someone who appears sick. I carry hand sanitizer to use if I shake hands.
The hardest part is diet. I have to avoid sugar and salt (for which there is no test except the swelling in my legs), both challenging when you eat out a lot as we do or buy prepared foods. Lately my blood sugar has been running a little over 150--they want me to keep it under 150. I also can only eat well-done meat, and no food that has sat out or been in the fridge over three days. Processed meats are out due to salt. Salad bars and buffets are out as is any raw fish, clams or oysters, due to the risk of food-born illness. I do a lot of my own baking with Splenda, pasteurized eggbeaters, light butter, canola oil, etc.
Much of this is for life.
I can't say enough about the professionals at the UW and VA hospitals; surgeon, doctors, NP, nurses, PTs, RT, Health techs (CNAs) and others. My care has been terrific and appointments timely, despite what you read in the hospital.
If this sounds hard, the consensus is that I would have been dead by April without the new lung. My surgeon said, "You were getting sicker fast." I say a prayer every day for the donor and his/her family--I know nothing about them. I was told going in that the one-year survival rate was 80%, the five year rate was 50% for lung transplants. I know or know of several who have died this year. So I'm happy to be here enjoying life and my family.
I thank everyone for their thoughts, prayers and good wishes.